On a sad note..

We have all heard about flight 3407 that crashed outside of Buffalo, NY. Well it definitely comes to close for comfort for me. I live less than an hour from where it happened. My location is straddled by international airports; Rochester to the north, Syracuse to the east, and Buffalo to the west. In my past, I spent many a summer in a small college town south of Buffalo. The best part of the drive, besides seeing my Granmother, was seeing the planes land over the thru-way. Litterally as you are going 65 miles an hour, and if fate has its way, you can see a plane decend and land right over your head. The best part was at night when the runway lights are all lit up. All those times I never thought what if a plane misses the run way and hits the thru-way? I guess I've taken it all for granted. I can't tell you the countless number of times I've driven through that area. I can't tell you the countless times I hear planes overhead descending, slowing their engines, making their way to Rochester. It all seems unreal that this happened in our "back yard." I guess it just goes to show how fragile life is, wether your a known celebrity or not. They are all connected now, lives ended in the blink of an eye. No one to tell about the heroics of the piolet. No one to describe the life ultering experience, and be reunited with loved ones.

Cluster Buster Buddies

I have been home on disability dealing with this ferocious conditon for a little over 1 year. Along the way I've aquired some prerequisite compulsion like tools for trudging through those long days. Whether it be an inadamant object, human, or canine. Its kinda like when your a kid home sick. You have those certain things you crave, because somehow they just make you feel better.

Friends/family

Obviously my support system. I like to have less people (the better) around me when im seeing the fires of hell. Mostly to be silent and let me get through it, and to wait on me if I need something. (Not that I like being pampered)

Nina the Shih Tzu

I swear this little Ewok knows when I am in pain. She always seems to be in my lap, or on the floor next to me looking up with her big eyes. She's an old lady herself with minimal aches and pains. How she can feel mine I'll never know. But having her come over to me everytime im in pain (even if its hardly any) will never get old.

Chuck the 2 Buck Duck

He's a stuffy (stuffed animal) that my husband so lovingly purchased for me last Easter for $2. He's just the cutest, perfect huggable sized, softest duck in the whole wide world. He's heard his fair share of deafening shrieks, and has been soaked tears.

Crocheted Shawl

This is just a shawl that hangs on the back of our couch, that I crocheted. Its lacy, but warm. Its just perfect to throw over my shoulders, to add an extra bit of comfort!

3 chenille couch pillows

Perfect for those "have kinda annoying pain" days. They're molded to fit my head, and so soft too!!

Blankets

Duh! How can ya be comfy without a warm, blankie in snowy upstate NY??

Tea

I know caffine isn't the best choice for a chronic headache sufferer, but dammit I still crave the stuff! It can be any kind (hot or cold) but I prefer Red Rose hot!!

The dreaded fattening taco salad feast

I know, I know... but taco salads are AMAZING!! Just to show how anal I am, I only eat them from Mikey's pizza shop. Deep fried shells, taco flavored hamberger, shredded mozzarella cheese, lettuce, tomato, black olives... insert drool here.

Ice packs

A well known favorite to my face and neck. I have 4 of them. One that's squishy, 2 that are hard (actually they're lunch ice packs with Hello Kitty and Disney Princesses on them!) and 2 that fold into thirds. I buy them whenever they're on sale, you'd never know when one will bust open.

PJ's

Any and all, flannel, fleece, hoodies... Ahh massive comfort cannot be taken for granted.

Tv/ internet

When your home all day everyday life gets kinda repetitive. I like to break up the day reading (if cranium allows) watching tv, and going on the internet. I love to research anything! I am just a knowledge whore. The more the better!! I also love to read other blogs, the Gosselin gossip (I hate that woman, but she does have a nice name! ) get my daily news and weather. Pitiful yes I know. Mind you this doesn't happen everyday either. Im lucky if go on 10 mins a week! If the pain is non exsistant I could be online for upto 2hrs a day!

The Demons

I have always said there is a demon, or a unrelenting demon seed living in my head. Now that the clusters are gone, I've decided to go in a different direction. Besides describing them I want to try to get into the grinding gears of their mechanics. Seeing as though I already have a close, almost intimate relationship with the shady loser. Hopefully my speaking of them won't unleash the beast!! (knocking on wood...)

The demon/seed= the cluster headache.

I swear to all that's holy that there is this little horned devil guy running an amuck in my head. He pokes, he prods, he bites, tears, and leaves a excruciating, throbbing and burning trail. He's a homeless little glob that comes and goes as he pleases. Not only does he reside in my head, he picks up housekeeping in my eye, sinus, cheek, temple, jaw and ear. He's a sneeky bastard! Not even the cops (meds) can catch him. But what to name this hostile, mean, cruel, homicidal maniac??? I got it! The Ripper! Sounds like a bad WWE professional wrestler. He's stage moniker is farting! Oh my we've hit a new low...

The chronic daily headache:

Its still painful but nothing like the clusters. This guy is kinda dull, annoying, boring, a little lazy but has a fiesty side. Kinda reminds me of a realxed, sun burnt surfer dude that tends to get fired up over a thunderous wave. This is harder than I thought. I can't think of any names. For boring? Fiesty? Truely has to be writers block. Either that or the dull pounding in my head... maybe I'll finish tomorrow. Like I said plenty of times I DON'T KNOW

My Minions

Im feeling pretty good today, so while I've got that going for me Im going to break up another long day @ home. I should be crocheting winter hats for family, but I'd rather do this! They can wait I guess. I've already postponed some since Christmas. They're family, they'll understand right??

I'd like to start off by saying a big Thank You!! to my husband, Mikey. (Dave too. Its one of those stories, he's known by both his first and middle names) He's been my #1 fan through out this whole ordeal. He's been my rock, holding me from falling deeper into the chasm. Letting me cry to (and on!) him, letting me get out my frustrations in a verbal assault, and always telling me no matter how much pain (or how utterly dreadful I look) I am gorgeous! While I been having problems with this blog (people not being able to see it and what not) he has always wanted to post a comment. I helped him get a google account, and it still wouldn't work. So if he can't post, I'll wite about him. Mikey your the most sweetest person I know and Im glad to call you my husband. Thanks again babe!

My parents also deserve a big Thank You!! My Bumbie (its a nick name I gave her, not her real name!) is the best mother a lady could ask for. She's always there when I need to vent, (sorry bout the phone bills Mikey!) she's the first to ask if I need anything, even though she lives 15 min away she'd drop everything to come over if I needed her, she's bought me things when we didn't have the money, oh crap this could go on and on. Bumbles, just know that everything you do comes with an immense sense of thankfulness that I could never repay. Your one in a million!

Billum (my dad) also deserves a huge Thank You! His intense culinary expertise (with no formal training mind you) has gotten me through lonely nights when I didn't have the motivation to cook. That's funny, not that I can cook. Im lucky if I can make a frozen dinner. Getting back to the point here, he's an amazing chef and it has all helped us maintain our winter weight. One thing I will never forget, is he came to help me prepare Thanksgiving 2008 dinner. He took his time and slowly showed me the steps I needed to take. No recipe, at all! That's by far amazing to a non chef. He's not only a great chef, he can bake a bad ass cheese cake! (Right Mikey?) That's not all, don't get me wrong my Dad has many qualities that make him a great person and Father. He's hella funny, loves his dogs (its for the boys!!) and loves all of us unconditionally. Thanks again Billum!!

Also and extended warm Thank You to all my in laws, nieces, and nephews. All your support has been appreciated. I can't name them all, my husband has 5 sisters and 13 neices and nephews!!!!

Last but not least, a Thank You! goes out to my first follower of this blog Payday! He's a good friend of my husband and I. He works with Mikey at the best pizza shop in the area!! (Don't worry boys I won't mention the name!) Anyway, I asked him lastnight through an email if he could get onto the blog from his home computer.
(Side note: my husband and I must be the last people on Earth whom do not have a computer, or easy access to one. Besides the library. Yuk! No thank ya! I do all my posting through my splendid Sidekick...) Anywhoo, he emailed me back saying he read the blog. Little did I know he was the first to follow! Thanks again Payday!! Keep those cat pictures a coming!

I do have to confess I am so anal about they way I write this. I think I've changed just the last post 8 times!! Whether that's good or bad I couldn't give a flying crapola about! Its just nice to spend some down time with Mikey, read him lines and he gives me some great imput! You'd think he was a professional writter with some of the wity things he has to say!

I feel better now... I better get something done around here while I have the energy.

The Crap List

Its been a while, hasn't it? I haven't posted because, well, things haven't been going all too fabulously.

1. Nuerologist YAY! End sarcasm here...

(Just for facts sake this is the same nuerologist listed below) Yet again, I dumbly goto see this quack, and AGAIN he shows me what a complete idiot he is. Did we not see this coming?? "Here take this and let me know how you handle it". Your kidding me right? The drug he gave me (Topamax) I already had an allergic reaction to. "Oh that's ok, we will put you on another drug, to counteract the side effect" WTF?? Umm how about a big fat NO!! I've been on 20 something drugs (a lot has changed since October) what's one more? B.S!! He's a nuerologist for god's sake!! One would think he would NOT put me on a DRUG that I could potentially DIE from??
Seriously this man is a joke of a so called Dr. He's a in and out type of guy, "Here's this drug call me in 6 weeks". Well what if I have a problem with that drug? "Call the office, and we'll take care of it" Ok. Sounds good. EXCEPT: when I call the office to leave YOU a message, I NEVER get a call back! Gravy!

2. The fantasic Holiday Season...

grrr... It all went well, but too much all at one time. Can you say massive pain?? Enough said!

3. New pain!
(Shut the front door! Really??)

Those two words scare the ever lasting life out of my soul. Not only have I experienced severe pain from the CH, I've now "out of the blue" developed a new condition. Apparently if you have one type of headache you can obtain others... Well I'll be damned!! So now I get cluster headaches, on top of chronic daily headaches, on top of tension headaches! Which all are nothing compared to the satanic CH. Yay me!!

4. The hibernation of the infamous cluster headache

Now for some strange reason I haven't had an attack in 2 months! I know cluster headaches come in cycles, and Im just starting to figure them out. For example when they start and stop. I just don't want to be in that postion to have CHs and chronic daily headaches at the same time. If that's even possible.
It's a major accomplishment for me, going so long with out an attack. No preventative medication, nada! Which makes me wonder "Do I even need to be on preventative meds?" Seeing as though I haven't been on any since early December, and haven't had an attack. It seems like all that hassle was for zip, zero, ziltch. But believe me I can handle the pain of the daily headaches any day as long as the clusters stay dormant. Oh well, only time will tell how my semi pain free remissions last.

5. "Woe is me"

I got so depressed and sick of my pain that all I wanted to do is sleep, if I could. I can't believe it happened but I guess its all apart of the pain bearing process. It has been over 2yrs that I have been dealing with with no relief in cluster headache duration, just pain modification. This new diagnosis of chronic daily headaches has been a pain in the ass. Meaning, its been somewhat easier to deal with the cluster period over, still painful none the less. Adding fuel to the headache fire!
I guess the only reason I gave up was because I thought nothing was going to work, the Dr's told me I'm fabricating the pain (many have told me that), and it's all in my head. (Literally! HA! the mean Dr's say that too)

Being in daily pain ranging from "Ok I can deal with this" to banging your head on the floor hoping the constant thrashing will somehow kill the unrelenting demon seed living in my head, has been by far the worst events in my small existence. The daily pain takes its toll on me physically and mentally, as it would for anyone. I've been entombed in this house, not seeing the outside world for days on end. Afraid to go out because of when or how the pain will spike. For some reason I was Ok with that. During those times I would picture what I have always wanted for my life, and what I thought I should be doing besides watching precious time pass me by. That in and of itself brought me down even farther in this torturous spiral. Finally she gets it out!!

Its been a long battle, and its not even close to being over. But it is not by any means the worst in history! There comes a time you start to say to yourself over and over "How could this get any worse?" and "What will work to make it all go away?"... It will get worse and there is something out there that WILL help. Im 100% positive of that. I've just got to get to the other side of the so called "healing street". While that bridge seems to be closed for construction, I've just got to put on my big girl unders and deal with it!!! My day's coming, help will come!!

The only thing that seems to bring some realism is finding other blogs/personal experiences and come to the realization... Its not all that bad. There are people who have my condition even worse and I sympathize with you. May we all be cluster heads on the same boat that will surely sink. But with time, medical research or a cure, as our saving grace!

hello world!!!

I am so happy that I'm finally doing this!! Well about me... I'm 27, and I've been dealing with Cluster Headaches (CH) for 2yrs. (Episodic: meaning they come in cycles with pain free remissions) I know it's not long for some people but, if you deal with this horrific pain, its sure long enough. I have been on 15 different CH medications in the past year. Absolutely none of them have seemed to help. Except for the Prednisone (steroid), and my first trial of Verapamil (preventative). I just recently went to see a neurologist. That was fun... He didn't do much, atleast not yet. Just asked the routine backround questions, and put me back on Verapamil, at a signifigantly higher dosage. Which I wasn't happy to be back on!! I hate how tired it makes me. Also I have been on it for a year now, and it only helped for 6 months. But who knows, maybe at this dosage it will show some improvement of regulating the headaches.

Right now at this very minute, I don't know what anyone would classify my pain. Small almost non exsistant CH? All I know it's about a pain level 5. (Completly normal for me on a daily basis) It's just a constant annoying pain, in my neck, cheek and ear. (Right side) It has been around for 2hrs or so, and has not changed pain level wise.

I suppose your wondering why I have called this "I don't know". I absolutely hate to say this, but that's kind of my motto. I don't know what tomorrow has in store for me, or any day for that matter. My CH attacks are so spontaneous that I don't know when they will happen. Also, I really don't know what's next for me. What medication will finally help to prevent the attacks? What will help with the pain? If I'll have to get surgery? I just don't know. Its all a guessing game. What I do know is that I'm very informed, I do constant research on CH. I talk to my Dr's on a constant basis filling them in.

I don't want to become a victim of this condition, but its VERY hard not to. Speaking of that, I'm home on disabilty. My attacks are so varied that its hard for me to have a normal life. I cannot make plans, because even I don't know how I'll feel til that very day. The worst part is that I've lost my love for hobbies. Its hard to try to focus on something when you feel depleated. I try to make the best of it, but sometimes depression washes over me like a wet blanket. Hampering any kind of energy, emotion, and just leaves me an empty shell for days on end. No one can even begin to know the pain I go through, unless you see it in action. That's another hard thing for me to deal with. Spreading the information on CH. A lot of people around me DO NOT understand what my life is like. Most likey they probably never will. A headache may be a headache, but a Cluster Headache is vastly different...

About my CH

I was just thinking, I didn't really elaborate on what CH does or is. Well in my terms here we go...
Cluster Headaches are very rare and effect men more than women. Im only the 3rd woman my neurologist has seen in 15yrs!! CH are usually one sided, even though they can change sides. (Like me) CH has the most severe pain I have ever felt. It feels like someone is poking a red hot ice pik into my eye. (The eye pain, and tearing starts first for me) Then the world comes crashing around my feet when the head pain starts. It is UNBEARABLE!! Sometimes the pain happens so quickly I have no warning signs like the eye tearing, I vomit. But that is rare. Once a month??? The AMOUNT of pain cannot be decribed into words. But in my opinion it's an an intense burning, stabbing and squeezing comparable to what some may say childbirth, sans epidural. The pain of a CH has led people to classify it as a "suicide headache". All because the horror is so excruciating you could take your life. I tend to rock while sitting, holding the side of my head that hurts, or even bang it on the floor, wall or table etc. And cry.... cry cry cry. It feels at the onset that it will never end. I just try to breathe, focus on a beach somewhere, or pull any happy image to help me get through it. Usually I can't do this. Its tough to try to focus on anything other than the grasping demon in my head. I still worry at this time about what my husband sees. Its got to be the hardest thing seeing a loved one in so much constant pain. Even my mother has seen it, and knows what it does to me. I still wonder what thoughts went through both of their heads. Wait im babbaling... Then 20-45mins to a few hours later its over.
The most attacks I've had in a day is 8. All severe in pain. Level 10. All lasting around 45mins and 20mins apart. That was the defining day for me. April 22, 2008. That day was both depressing and encouraging. I realized that I would never be the same person. I had to deal with this or suffer. Which I still am to this day. I was on prednisone during that time. I thought "my god is this what my life is going to be like?" because the prednisone is a steroid and supposed to surpress the attacks. I didn't want to live with the attacks, but didn't know what to do. If the steroids weren't helping then what would?? I fought harder for my disability claim. I knew as much as I didn't want to realize that I needed it. I couldn't tell when they were happening, and still can't. I couldn't function, or even sleep. I needed to help myself before it got worse. If it could even get worse then that.
I would advise anyone to goto the O.U.C.H website. (organization for understanding cluster headaches) www.ouch.org If you want more detailed info on CH.